2 patient evaluations for Diaphragm Pacing Implant taken for the purpose of 'ALS (Amyotrophic Lateral Sclerosis)' with a perceived effectiveness rating of Moderate

Tom M
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Tom M
Sex: M
Data Quality: 3 stars
Bulbar: none
Arms: moderate
Chest: moderate
Legs: severe
I am: g
I have:
ALS

See Tom M's full Diaphragm Pacing Implant history

Dec 3, 2012 (Started Apr 11, 2012)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Moderate
  • Side Effects: Moderate
  • Adherence: Always
  • Burden: Not at all
Dosage: 14 hr Daily
Advice & Tips: After a trip to Maui where I found it difficult to relax, I realized there is a general level of discomfort and anxiety when I have the pacer on. On a trial basis, I'm cutting my usage to about 14 hours/day, from 6pm-8am. So far, after about a week of this usage I am feeling better during the day.
Cost: < $25 monthly

Aug 30, 2012 (Started Apr 11, 2012)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Moderate
  • Side Effects: Mild
  • Adherence: Always
  • Burden: A little
Dosage: 23 hr Daily
Advice & Tips: I now have the pacer on about 23 hours per day. I'm no longer feeling the need to shut it off for an hour or so like I was a couple months ago. I would say that I've finally acclimated to it. One month ago at ALS clinic my FVC and MIP measurements were both up, to 73% and 47 respectively. I take this as a sign that the DPS is helping to stabilize my breathing ability. (Perhaps also I'm getting better at taking the test!) All costs except a $100 hospital co-pay are paid by my Medicare HMO. Replacement batteries, cables, and connector bandages are also covered, at 100%.
Cost: < $25 monthly

Jun 18, 2012 (Started Apr 11, 2012)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: Moderate
  • Adherence: Usually
  • Burden: A little
Dosage: 16 hr Daily
Advice & Tips: My setting were last increased on 5/23/12. Now it wears me out. I try to have the pacer on all day and night but my breathing muscles tire and I need to turn it off for a while and/or use my bipap more during the day. So my pacer usage is down from 23 to about 16 hours/day. And my bipap usage has increased to about 14 hrs/day. I will see the neurologist and DPS medical team on Wednesday and I'm going to request my pacer settings be reduced to the level they were 4 weeks ago. I'm thinking the setting is too high now. I sleep very well with the pacer going though. I wake rested and comfortable and just want to keep lying there in comfort. My breathing syncs with it while I'm asleep but during the day it doesn't and that may be part of the problem. Does it work? This is the big question and I can't answer that any more than I can answer whether Rilutek works. It hasn't made my breathing better but it's only supposed to slow the progression. I had a PFT done on 5/29/12 six weeks post-op. My FVC had previously been on a steady pace of -4 points/month but actually increased from 49% in March to 53% in May. But my MIP decreased from 48 to 37 in the same time period.
Cost: < $25 monthly

Apr 24, 2012 (Started Apr 11, 2012)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): None
  • Side Effects: Moderate
  • Adherence: Usually
  • Burden: Somewhat
Dosage: 16 hr Daily
Advice & Tips: I've only had the pacer implanted just under two weeks ago. I'm experiencing some perhaps typical adjustments. - 1. Learning to shower and change the dressing, 2. Getting used to the feel of it, 3. Occasional problems with the cable getting tugged on. I don't see any benefit yet. If anything, breathing is a little more labored than it was before surgery.
Cost: < $25 monthly

  • 2 helpful marks
buckaroo
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buckaroo
Sex: M
Data Quality: 2 stars
Bulbar: severe
Arms: severe
Chest: moderate
Legs: severe
I am: n
I have:
ALS

See buckaroo's full Diaphragm Pacing Implant history

Dec 28, 2009 (Started Jun 06, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Moderate
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 12 hr Daily

Jan 14, 2009 (Started Jun 06, 2008)

  • Perceived effectiveness for ALS (Amyotrophic Lateral Sclerosis): Can’t tell
  • Side Effects: None
  • Adherence: Always
  • Burden: Not at all
Dosage: 12 hr Daily
Advice & Tips: It will help your diaphragm to last longer. I have had the pacemaker since June, 08 and all my breathing numbers are maintaining.

  • 2 helpful marks
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Showing 2 of 2 patient evaluations for Diaphragm Pacing Implant